Best RCC Hospitals in US

14 Posts | Page(s): Prev 1 2 

RE: Best RCC Hospitals in US

by dmcdowell on Thu Feb 02, 2012 03:23 PM

Quote | Reply

Marcy,

My husband was diagnosed in May 2011 and has been on Sutent since June.  He was diagnosed with stage IV - large tumor on 1 kidney, his pelvic region and a small spot on his liver.  Since we've been on the Sutent, the existing tumors have not grown but the scans are starting to show a couple of additional small liver spots so our physician wants him to go on Afinitor.  After reading your message, it gave me hope and I really would like to hear about your husband's treatment plan since he is in remission.

Donna

RE: Best RCC Hospitals in US

by johnnyi on Fri Feb 03, 2012 01:31 AM

Quote | Reply

I am being treated at Dana Farber Cancer Institute in Boston.  The knowledge and caring by my oncologist and the NP, nurses, receptionists, in fact everyone I come in contact with, is fantastic.  

I have stage IV MRCC, I had a couple of surgeries, started on Votrient, now in a clinical trial w/ Torisel and Avastin.  Coming up on my 2 yr anniversary in April.

One of my surgeries was at John Hopkins, in Baltimore, and I used them for second opinions on my treatment.  They are also good, but not the same level as DFCI.

I hope you are able to find a RCC specialist close to home.  Also don't be afraid to get second opinions.

RE: Best RCC Hospitals in US

by des12 on Fri Feb 03, 2012 03:04 AM

Quote | Reply

On Feb 02, 2012 12:35 AM MarcyS wrote:

Mary-

What a great thought it was to post cancer centers  . . . and so caring of you.

We went to Seattle Cancer Care Alliance, Dr. Tykodi and I can't speak highly enough about the care Orville received.  Calls returned within an hour at the longest and just overall, a very caring group.

By the time he was diagnosed he had lost 50 lbs, stage IV, grade IV, football sized tumor engulfing 1 kidney, mets in the other kidney, adrenal glands and both lungs.  We almost lost him.  He went from that to remission.  This was because of the care and guidance we received. (Not to mention massive prayer chains)

I am so sorry to hear your husband is not doing well.  My heart goes out to you and him.  Keep the faith, my prayers are with you.

Marcy

Hi Marcy,

I know someone else asked the same thing and we're all looking for that one magic bullet:) What did they do for him? I asked my husband about an hr ago if he'd consider surgery and he said Oh God no. My doc seems to know what he's doing, but he is on so much medication I think it all kind of slips by him. He said he feels good, but yet he doesn't get off the couch or out of bed.

The terrible daily every 2 hr vomiting an/or diahreaa has ceased, but he's now losing weight quickly. He was down to 161 from 176 last week and today I weighed him and he was in the 156 range. I don't understand him or any of it really. He's always given crazy answers even to the nurses who ask him what his pain level is. He can say 0 and 2 mins later an 8.

He's also a handful to care for I tell ya. We had an incident where he argued with my son and took his pillow and a blanket and said "Come on". So stupid me I got in the car and said well where to and He said to a motel. I said no and we wound up at my sister's house. If that wasn't bad enough he got dressed and put his coat on, took his pillow and blanket and started for the car again. I didn't want to disrupt anyone's life anymore so I drove around with him for a few mins. He insisted I take him to his sisters 3 hrs away. I said no, so he said well we can sleep in the car. Then he got out of hand and decided if I wouldn't take him, he'd walk. It was freezing and snowing, he made it 2 blocks and I was trying to keep him in sight because he kept going in and out of people's yards trying to avoid me.

I figured he was going to get shot or freeze to death so I dialed 911 for an ambulance and 2 nice cops came and talked him into getting ito their car. they took him to the hospital. They explained to me that they would have to restrain him and I told them to be very gentle with him as his tumor in the belly was so large. Someone had to restrain him and I couldn't do it and drive. He hated me for a few hrs that night, but they rearranged some of his meds and sent him home after a couple of days.

What a nighmare as I've said. I was crying that it had to come to that, but his well being was at stake and little did I know in all of the confusion, I was going down a one way street the wrong way as the cops so nicely told me.

If I survive this, it will be a miracle. I've lost about 25 lbs. and am not well either.

So that was our exciting New Yrs and neither of us had been drinking. lol

Got to have some sense of humor before I lose it completely.

RE: Best RCC Hospitals in US

by mrbuck on Fri Feb 03, 2012 05:17 AM

Quote | Reply

I have nothing but admiration for you and your dedication to caring for your husband. He is one lucky man to have you and although he isn't able to tell you he knows it inside.

This is a terrible disease and you are having a very bad time of it. We all read this and even if our loved one is doing okay at the moment we all know things will likely get much worse. We can only hope that new drugs will be developed to fight MRCC.

God bless you and keep yourself as healthy as you can.

Patricia

14 Posts | Page(s): Prev 1 2 
Subscribe to this message board discussion

Latest Messages

View More

CancerCompass Poll

Did you or your loved one seek a second opinion before starting cancer treatment?

Gateway for Cancer Research
CNCA Health

We care about your feedback. Let us know how we can improve your CancerCompass experience.